Family and Friends
People who have a family member or friend who is coping with inherited elevated risk for cancer want to be helpful, but knowing just what to do is not always easy. This section of the website summarizes the advice people we interviewed had for friends and family regarding what is and is not useful. Although all these messages are from people with on-going risk, some also include reflections on what is helpful when coping with prophylactic surgery or cancer itself.
Show You Care
The most frequently repeated message to family and friends voiced in our interviews was – as put by Kerry – “reach out.” Steve K. says just “let them know you are there.” Others agree, noting how much it means when people simply “offer to help” or send a note.
Chelsea loved getting cards in the mail.
Chelsea loved getting cards in the mail.
What are some ways that people reached out to you that you valued in particular?
I had a lot of cards, and that was nice, just seriously--
Like in the mail?
In the mail. And I remember -
Wow. The old-fashioned way.
The old-fashioned way. And a lot of them were funny or like very, very touching. You know I can remember a couple of them I remember in particular that were just like-- they made me cry. They were so sweet. A couple funny ones. I even received one or two from a friend of a friend who had also had cancer. So I didn't even know them personally, but they were like, “oh, I have cancer, and now [NAME] does, like I want to reach out to this person.” So that was awesome. You know I had them all on my wall in my bedroom for at least six months. It was just like a nice reminder.
All our interviewees were grateful to family members and friends who made it clear they cared. But some preferred to be asked what they need, while others wanted helpers to just dive in by bringing food, initiating a plan, or otherwise anticipating what might be useful.
Christian notes there is no “standard of care” when it comes to helping others, so it is best to ask what would be useful.
Christian notes there is no “standard of care” when it comes to helping others, so it is best to ask what would be useful.
I would say, talk to that person and ask them what they need, because everyone's different. There's no standard of care. There's no standard of coping. So you really have to, “What, what do you need?” And more specifically, “What do you need from me, or what can I do for you? If you just need to talk and have someone listen and not say anything, great. I can do that. Or if you just want to, you know, let it be and not really talk about it, that's fine too.” But I would say, definitely ask that person, “what do you need from me?”
Steve Z.’s experience recovering from having his colon removed changed radically when someone in his community fixed up the yard he sees through his window without even being asked.
Steve Z.’s experience recovering from having his colon removed changed radically when someone in his community fixed up the yard he sees through his window without even being asked.
But the fact that I had a circle of friends and family that really were there, that's a big deal. It made the whole thing much easier, you know? When you're-- you know, I spent the month in the house after the surgery. I couldn't really do anything. Actually, it might be even longer. But, you know, my lawn looked like crap. It was terrible. And I'm sitting in my house, and the only thing I see is my yard. And, you know, the kids are working. Everybody's kind of busy. And the one thing that was driving me crazy is my yard. You know, it looked terrible. I know it sounds silly. But then one day, I was actually at the doctor's, came home, my yard was done. A family that plays baseball with my son owns a lawn care business. And they just came through, and he stopped the truck, got his crew out, and they cut it. It was like, wow. It was the greatest thing ever. I'm like, oh my god. Because all I was thinking about, every time I looked at my yard, was, oh my god. It looks like crap. I got to fix my yard. But I probably would have started to do it, but-- because I wasn't supposed to. I tried to follow the directions of the doctors. But he did it for me, and it was like the biggest deal. You know, it was really nice-- unexpected. But man, it made me feel good. Because, you know, I want my yard-- I want it to look good. I spent a lot of time on it. All of a sudden, because I can't do it-- you know, it was really, really nice. And I see the guy all the time, and I’ll never forget that piece. Again, that was just a guy from the community-- somebody I knew-- a friend. But certainly, he didn't have to stop and do it. And it just kind of changed my whole-- I would go, like, wow. My yard looks great. I feel good. Look how good that looks. So it was a big deal-- out of the blue, too. You know, nobody asked to do it, so.
It’s hard to ask for something, says Lisa S., but can be easy to receive a specific offering.
It’s hard to ask for something, says Lisa S., but can be easy to receive a specific offering.
How to do it. Well, you can always send a card or a letter. You know, that's not intrusive. Say, hey, I'm thinking of you. A card or a letter is always very wonderful, or a text, or an email. That's always won-- that's really the best. That's actually the best. I always—I less appreciated people that would ask me what can I do for you. I always appreciated more-- and that's why the meal train was great because they just came over with dinner. They didn't say what can I do for you? I’m never going to say—nothing, I'm fine. Everybody wants to be a martyr. It's very hard to ask for something. It's always easier to receive. And people with cancer always want food. Food is great. You know. Or you can always come over and say, “Hey, do you need that cat litter changed?” “Yes, I need that cat litter changed.” “Can I pick up some milk for you?” “Yes, you can pick up some milk for me.” So specifics are really important. Giving a specific. Yeah, “Do you, do you need your kids picked up from school?” “Yes, I need my kids picked up from school.”
Stay Aware of Your Own Emotions and Needs
A number of people noted that friends and family are most helpful when able to master their own personal feelings. Several advised not to “panic” or “be frightened” while offering help – though this can be hard for family members who may also be affected by inherited risk. One interviewee describes having both cancer risk and cancer, and wishing she had had more “emotional support too,” even as most of the family attention turned to potential cancer risks for the younger generation.
Cynthia says it’s important to respect privacy while offering help, and to understand people don’t always want to disclose details about their experiences.
Cynthia says it’s important to respect privacy while offering help, and to understand people don’t always want to disclose details about their experiences.
You can offer to help and provide without asking them to tell their story, without making them feel like you're invading their personal space. There's kind of a difference. You know, instead phrasing things like you want to know what they're going through and how can I help in specific areas or something like that, a lot of times people feel that the minute they offer their help they’re asking that person to disclose. That's not necessarily the case. If somebody comes to me and says, “Can I help you with something? Can I bring you some food?” That doesn't mean that they want to know my personal story. And I'm not going to feel like they want to know my personal story. And if I don't feel like sharing my personal story, I don't feel obligated to share my personal story if I don't feel like it. So, just because somebody offers to help doesn't necessarily mean the patient's going to feel they have to give information that they don't feel comfortable giving.
Heather says she wants her fears acknowledged rather than “bulldozed” by people close to her who may be struggling to face the reality of her cancer risk.
Heather says she wants her fears acknowledged rather than “bulldozed” by people close to her who may be struggling to face the reality of her cancer risk.
I went through this with my husband. That first year that we were dating and I was heading into my screenings, he was that person who kind of blindly said, “You're going to be fine. You're not going to get cancer. You don't have cancer. It's going to be fine.” And it was the most anxiety-ridden screening round that I've had in all of them. And so after that one, we had to really hammer through it. And it was tough. Like we had some, some tension around it, and it was hard for me to properly express it. But ultimately, going into the second year then, what I was able to finally verbalize to him was, I know that for you, like he needs, he needs me to be OK. He needs to believe I'm never going to get cancer, and I’m not, I don't have it, and I'm going be fine. But I need you to acknowledge that that may not be the case. I need you to acknowledge that I may come out of one of these screenings and we may be told, we found something. I need that to just be validated. You can still believe that I'm going to be OK. And you can still tell me, no matter what, we're going to be OK. We're going to figure it out. And we’re going to, you know, we're in it together. But you can't tell me I don't, you can’t tell me I don’t have cancer at any moment, and you can't tell me I'm not going to get it at moment, because you don't know. And saying that diminishes my fears. It tells me that I’m not valid in feeling that way. And I think the most important piece of advice I could give to anyone is, the receiver of this type of news, or the person supporting someone in this type of news, would be, let them feel however they feel. Tell them, it's totally fair for you to feel that way. That's a valid concern. That would be, yeah, I can see how that would be difficult, or something I'd be worried about. It's also OK to say, but the good news is you're being proactive. The positive thing in all of this is to say, you're getting your screenings done regularly. We're going to be out in front of it. Like those are the words of encouragement. Don't tell me I'm going to be fine. Don't tell me I'm not going to get cancer. Tell me, we're going to get out in front of it. You're doing these screenings. That's fantastic. How cool of you. Knowledge is power. Like those are the positive encouraging things. And then the validation of the, of the not-so-positive things. Let them be afraid. Let them be sad. Let them be worried about a screening. And let them know that, yeah, it's OK to be scared to go into your screening. It's an unknown. But hey, you're getting a screening done. And if there's something there, they're going to find it sooner than anything. And then we'll have a plan of attack. Like that's where the encouragement and support comes from. Less from kind of bulldozing someone's fears with your own need to not address it or deal with it.
Concrete Ways to Help
Whether struggling to cope with elevated cancer risk, with cancer itself, or with the aftermath of risk-reducing surgery, people we interviewed described many specific ways others can help. Food was mentioned most often: making a meal, sending take-out, dropping off groceries, or setting up a meal train are all gratefully received. Picking up the kids from school, babysitting, and walking the dog were also described as particularly helpful. With respect to cancer risk specifically, Jack says he wants to be asked “’What do you know?’, What are you finding?’”
Susan says if someone mentions their Lynch syndrome, find out what’s on their mind.
Susan says if someone mentions their Lynch syndrome, find out what’s on their mind.
Be willing to talk to them about it. Don't be frightened. Don’t just pass it off as, oh, well, that's a piece of information, I don't know what to do with it. Don't just say, “oh, well, that's interesting, thank you”, and change the subject. I think if people mention it to you, it's because they either are worried about it, or they'd like to talk with you about it. Or they think you may have some reason why you should know about it. So I would say in a situation where somebody mentions Lynch syndrome, at least find out what's on their mind. And one of the ways to do that is say, “well, if I'm thinking about my own family, what should I be thinking about.” You're saying know your family, but what do I need to know about my family. And the answer is there is have they had cancers? And what cancers have they had? And which line-- which side of the family. Because most people, if they've paid attention as they're growing up, at least know who their relatives are.
Emotional Ways to Help
Emotional support from family and friends was described in our interviews as at least as important as concrete forms of help. Christian wants space to either speak with others about his Lynch syndrome, or to “not really talk about it.” Eve emphasizes the importance of kindness and empathy. Gina wants others to realize “it’s normal to have fear.”
Barry says it’s important to be positive and let people know that you are there for them.
Barry says it’s important to be positive and let people know that you are there for them.
Well, I would just say, you know, you know, continue to treat them the same way and—and to be positive. You know. You know, don't—don’t feel sorry for them. You know. Just, you know, make sure their spirit is up. You know. And if you see somebody, you know, if somebody doesn't want to talk about something, you know, just let them know that they might not want to talk now, but you'll be there for them. You know.
Chelsea is grateful to her friends for reaching out directly to her parents.
Chelsea is grateful to her friends for reaching out directly to her parents.
Yeah. My parents were incredibly supportive. And again, they were physically there with me almost every step of the way. And I know, like most parents, they would have done anything for it to be you know them instead of me. But I think in a lot of ways, it made-- it almost made it harder sometimes, because I think for them, it sort of was harder to see your child go through something like this and to be more or less completely helpless in it. You know there wasn't anything that they could do about it. Meanwhile, when I-- and in my position, there's nothing that I can necessarily do about it, but I could you know go to the appointments and check all the boxes and do what my doctor told me. And at least there was some action for me to take. So even though I definitely had moments of helplessness, like at least there were tactical ways that I could sort of figure it out. Whereas my parents— you know they didn't really have the same options. You know they were just there to support me, for the most part. And obviously, my mom took care of me after my surgery and things like that. But I knew they had a really tough time. And I-- that definitely was like a tough spot for me, too-- for them to be like that upset. You know some of the nicest things that you know like my friends did was, you know they'd text my mom and be like, “stopped and saw [NAME] today. And then we got a drink after work,” or-- you know if they couldn't be with me at an appointment, which was few-- I could probably like count them on one hand the amount of appointments that they didn't go to. You know like a friend here would go with me and then sort of report back to my mom. And it was really nice when my friend would reach out to my parents directly, also, and be like, “so how are you doing you know throughout all of this?”
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So you know it's-- the cancer's hard, but it's really hard to see what it does to the people around you.
Paul says polyposis syndrome can be an “invisible disease,” so his message to family and friends is “believe us when we say we don’t feel good.”
Paul says polyposis syndrome can be an “invisible disease,” so his message to family and friends is “believe us when we say we don’t feel good.”
It's sort of like an invisible disease. Because people tend to take you seriously if they can see your issue.
Mm-hmm.
So for me, people can't see it. And so for people with these other conditions, you know, in a sense, they’re invisible. So the message would be, just believe people if they're feeling poorly or, you know, believe what they tell you. I can’t go out with you tonight, because of whatever reason. Either I'm not feeling well or I can't go there, because I can't eat or drink the things that other people are eating and drinking. You know? And I guess it's similar to somebody in AA. You know, I can't go there because people are drinking. So I mean, I've been lucky, again, to have very, very supportive people in my life. Although, I did have somebody once tell me that it was because I had such a negative attitude, especially earlier in life. And if I had been more positive, maybe I wouldn't have gotten sick. So I had some words for that that I won't repeat here. So not everybody is going to be-- they think they're being supportive, but they're not. I've been lucky enough to have friends and family who are very supportive. But yeah, basically, the issues that we have are not always going to be visible. And again, if you haven't gone through it, it's hard to understand it. So just listen and, you know, believe the people when they tell you about it.
Heather is grateful to have a friend who will listen curiously to her questions and fears without trying to minimize them.
Heather is grateful to have a friend who will listen curiously to her questions and fears without trying to minimize them.
Sometimes it wasn’t, I didn't want the positive friends. The ones that always spin everything—“Oh, you'll be fine. Oh, you're not going to get cancer.” I didn't want that friend. I wanted the one who I went to and said, “I'm thinking about having kids, and that I could have a kid and die before that kid was old enough that I felt like I'd given them the tools they needed.” And the friend that would go, “Wow, yeah. That would be scary. How are you dealing with that?” You know, I would choose that friend. I needed to be able to share some of that morbid stuff, and I think that's a specific friend in your life. So it was finding, what are my needs? What are the conversations I need to have around it? It's not just about me informing all of my friends, “hey, I have this thing.” It was, what are the conversations I need to have about it? And then who, who of them are the right people to have those conversations?
Desiree, noting the non-visual manifestations of chemotherapy, emphasizes the need to be a good listener of words and of body language.
Desiree, noting the non-visual manifestations of chemotherapy, emphasizes the need to be a good listener of words and of body language.
Well, one of the things that I often, I have talked about is we tend to be visual people. And we make a lot of assumptions about how one is doing based on what we see. And although cancer treatment can have an outwardly impact, i.e., loss of hair, you know, loss of eyebrows, the truth of the matter is there are certain chemotherapies that you don't lose your hair. And so with that, that would be a totally different look.
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And so I just always encourage individuals who are newly diagnosed or someone who said, oh, a friend or family member has been newly diagnosed. I always encourage people, don't just look at them outwardly. Understand there's a whole lot that is not meeting your eye. And so this is where you now need to be a good listener. You need to be able, and if you know a person, their body language can often tell, even if they're not articulating it"
Lisa J. says sometimes you have to relearn how to be someone’s friend after they get diagnosed.
Lisa J. says sometimes you have to relearn how to be someone’s friend after they get diagnosed.
So sometimes we have to relearn how to be someone's friend or how to be someone's, you know, sister or brother or whatever your relationship. We have to learn something different about how to work with them or how to be with them, because they're not the same.
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I remember a friend-- and we're still friends-- but I- part of it was my fault for not saying anything. She knew I was sick, but she didn't know to the extent. And she kept saying, oh, my brother's coming up from Canada. I want to be here. My brother's coming up. And then he came up. And she didn't call me to tell me the weekend or the day that he was coming. And he goes back. And he's asking about me. I'm asking about him. And she's like, oh, it was just too cold. And I'm like, well, sometimes the heat wasn't great. But if I wanted to go out in the cold, I would have made it there. And I was like, OK. You know, and I didn't take it like, oh, so it's going to be like that, huh? But it was more like, no, how about you ask?